Burden sharing in families to children, adolescents and young adults with ADHD: Analysis of ADHD Helpline in Swedish Clinical Services.
ADHD services
care pathways
case management
coordinator
parental stress
Journal
Scandinavian journal of child and adolescent psychiatry and psychology
ISSN: 2245-8875
Titre abrégé: Scand J Child Adolesc Psychiatr Psychol
Pays: Poland
ID NLM: 101608905
Informations de publication
Date de publication:
2019
2019
Historique:
entrez:
1
2
2021
pubmed:
30
5
2019
medline:
30
5
2019
Statut:
epublish
Résumé
ADHD causes impairment in several life contexts and may increase stress and burden of care amongst family members. There is a lack of studies regarding gender inequalities in burden sharing in families of individuals with ADHD. The aim of this study was to investigate gendered burden sharing in families who were in contact with an ADHD telephone helpline in Sweden. A further aim was to identify perceived difficulties that prompted contact with the helpline. During a period of 28 months (from January 2013 to April 2015), calls were consecutively registered by psychologists manning the helpline through an anonymous digital form. After exclusion of 60 incomplete forms out of 1,410 (4%), information on 1,350 calls was analysed. The analysis indicated that mothers (82.7% of all callers) had a more important role as information-coordinators for children or adolescents with ADHD, as compared to fathers (13%) or other callers (4.3%). This pattern was also observed among the calls regarding young adults with ADHD. Helpline calls primarily concerned entitlement to academic support (57.9% of calls concerning children or adolescents) and healthcare services (80.6% of calls concerning young adults and adults). The study concludes that a perceived lack of accessibility to and/or coordination of the school and health care services may be a major stressor for parents of individuals with ADHD. The burden of care through coordination of services and information-seeking may be especially increased in mothers of children, adolescents, and young adults with ADHD.
Sections du résumé
BACKGROUND
BACKGROUND
ADHD causes impairment in several life contexts and may increase stress and burden of care amongst family members. There is a lack of studies regarding gender inequalities in burden sharing in families of individuals with ADHD.
OBJECTIVE
OBJECTIVE
The aim of this study was to investigate gendered burden sharing in families who were in contact with an ADHD telephone helpline in Sweden. A further aim was to identify perceived difficulties that prompted contact with the helpline.
METHODS
METHODS
During a period of 28 months (from January 2013 to April 2015), calls were consecutively registered by psychologists manning the helpline through an anonymous digital form. After exclusion of 60 incomplete forms out of 1,410 (4%), information on 1,350 calls was analysed.
RESULTS
RESULTS
The analysis indicated that mothers (82.7% of all callers) had a more important role as information-coordinators for children or adolescents with ADHD, as compared to fathers (13%) or other callers (4.3%). This pattern was also observed among the calls regarding young adults with ADHD. Helpline calls primarily concerned entitlement to academic support (57.9% of calls concerning children or adolescents) and healthcare services (80.6% of calls concerning young adults and adults).
CONCLUSION
CONCLUSIONS
The study concludes that a perceived lack of accessibility to and/or coordination of the school and health care services may be a major stressor for parents of individuals with ADHD. The burden of care through coordination of services and information-seeking may be especially increased in mothers of children, adolescents, and young adults with ADHD.
Identifiants
pubmed: 33520771
doi: 10.21307/sjcapp-2019-012
pii: exeley
pmc: PMC7709938
doi:
Types de publication
Journal Article
Langues
eng
Pagination
88-91Déclaration de conflit d'intérêts
Conflict of interest The authors declare no conflict of interest regarding this study.
Références
Pediatrics. 2011 Jan;127(1):e188-96
pubmed: 21172996
Psychoneuroendocrinology. 2015 Oct;60:7-17
pubmed: 26107579
J Clin Psychiatry. 2002;63 Suppl 12:10-5
pubmed: 12562056
Pediatrics. 2011 Mar;127(3):462-70
pubmed: 21300675
J Pediatr Health Care. 2015 Jul-Aug;29(4):352-63
pubmed: 25747391
J Intellect Disabil. 2013 Jun;17(2):134-44
pubmed: 23644952
J Clin Psychiatry. 2006 Apr;67(4):524-40
pubmed: 16669717
Pediatrics. 2009 Aug;124(2):580-9
pubmed: 19651580
Ann N Y Acad Sci. 2001 Jun;931:1-16
pubmed: 11462736
Int J Epidemiol. 2014 Apr;43(2):434-42
pubmed: 24464188
Patient Educ Couns. 1996 Jul;28(2):149-57
pubmed: 8852088
Psychiatry Res. 2016 Aug 30;242:121-129
pubmed: 27280521
Int J Med Inform. 2017 Aug;104:45-55
pubmed: 28599816
Community Pract. 2008 Mar;81(3):24-8
pubmed: 18416405
Ann Intern Med. 2014 Mar 4;160(5):344-53
pubmed: 24737273
J Pediatr Health Care. 2017 Jul - Aug;31(4):452-458
pubmed: 28017489
Demography. 2000 Nov;37(4):401-14
pubmed: 11086567
Sociol Health Illn. 2005 Sep;27(6):802-30
pubmed: 16283900
Atten Defic Hyperact Disord. 2015 Mar;7(1):1-18
pubmed: 25127644
Horm Behav. 2009 Mar;55(3):418-24
pubmed: 19162030
J Abnorm Child Psychol. 2016 Apr;44(3):561-74
pubmed: 26183609
Int J Qual Stud Health Well-being. 2014 May 28;9:23376
pubmed: 24875238
J Clin Psychiatry. 2012 Jul;73(7):941-50
pubmed: 22901345
J Intellect Disabil Res. 2006 Dec;50(Pt 12):963-9
pubmed: 17100956
Pediatrics. 2014 Mar;133(3):e530-7
pubmed: 24534403
J Marriage Fam. 2015 Jun;77(3):662-679
pubmed: 26430282